Jordan & Logan’s Story

This rare genetic disease we discovered was called Chronic Idiopathic Intestinal Pseudo Obstruction linked Filamin a Defect, which is usually fatal and found only in males. Research into family history found other similarly affected males. I ha to resort to putting the family tree above Jordan’s bed to get the doctors to pay attention to our family history. Even when we had a diagnosis for Jordan, we were unable to prevent his sibling Logan from being born with the same condition, as Jordan’s mother was pregnant by the time we found out. It was only when a medical student noticed our family tree on a hospital notice board that we finally got offered genetic testing.

This disease can’t be cured, just treated, and requires constant care. For Jordan and Logan, this means tubes to drain fluids from the small intestine from both sides of his abdomen and a nasogastric tube hooked up to a pump for fluid replacement. Causal vomiting is also part of the problem, along with the health system’s inability to be able to deal with the requirements of providing support to those caring for Jordan and Logan, who is more severely affected. Caring for the boys in their own home involves most family members. Both boys will require Total Parental Nutrition for life, as well as other surgeries.

These two boys simply don’t fit the boxes of an inflexible funding system. We know that the NDIS is still in the rollout phase, but I honestly don’t think we can survive until 2018 (as officially advised) without help. We were paying in the vicinity of $200-$500/week for medical supplies and medications. Until recently we received no support at all, because even charities, which claim to be flexible, have very strict guidelines and we just don’t fit.

After much campaigning we found support with in the community sector, and were able to access funding to help with the cost of the dressings and medications. We are extremely grateful, but it is not good enough that a family has to run a virtual hospital ward at home, without the help that is given to high profile diseases.

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About Rare Voices Australia

Rare Voices Australia (RVA) is a national, not-for-profit organisation established in 2012 with a vision to be ‘the unified voice for ALL Australians living with a rare disease’.
RVA is Australia’s national alliance advocating for those who live with a rare disease.
RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases.